8 October 2014

YOUR Special Needs Journey is Way Harder Than MY Special Needs Journey....

I am a mother to a child with special needs. I have met many families who have a child with special needs. I have connected with moms over Facebook and we have shared our stories. We have talked about our time spent in the NICU, our hospital stays, our sleepless nights, watching and listening to our babies breathing. We have talked about not going on vacation because there is no insurance coverage, our child is unable to fly, our child has never stepped foot outside of the hospital.....it has been three years. We have talked about our fears. We have talked about how difficult the journey has been and what the future holds. We talk about how we know exactly what Unit 2 has in the parent lounge, the sleeping arrangements, the waitlist to get into Ronald McDonald House, the food that is served in the cafeteria, what the specials are on Monday, the cost of parking, the NG tubes, 7 French, the cannulas, the tegaderm, the Snuggin Go, the sleep positions, the developmental toys, the FSCD contracts, the Disability Tax Credit, the helmets, the best foods, the worst foods. We send each other videos when we aren't too sure if we should take our child to emergency. We show weakness. We cry. We laugh. We go to bed knowing that tomorrow is another day.

The one thing that I have noticed with almost all moms that I have met since starting this journey, they all say that somebody else has it worse. Somebody else's child has more health concerns. The child down the hall hasn't seen daylight, but my child has seen sunshine, even if it was just at the entrance of The Alberta Children's Hospital. Your friend's child had an NG tube for 2 years, but your child only had it for six months. Your child has only endured four surgeries but the other child has been through eight grueling surgeries and with each one, recovery has been longer. I delivered a basket to The Rockyview Hospital a few months back to a lovely and wonderful family. The mom headed for her 35 week ultrasound and they noticed that something wasn't quite right. There were heart concerns, there was fluid, there were markers for Down syndrome. She was induced that day. Sweet Sofia spent weeks in the NICU, NG tube and oxygen. She is now back in the hospital, in heart failure, on oxygen and is too tired to eat. She is fighting right now for her life. I ran into her mommy the other day at the hospital, she looks tired and worried and stressed. I can see the pain and upset in her eyes and I can hear it in her words. Meeting with doctors, nurses and social workers, listening to updates, trying to figure out a surgery date. She looked at me in the cafeteria and said that there are so many other babies who are worse off, more health concerns, more worries. There are others who are struggling more than us.

This is my whole point....right here...right now...It is imperative that we all acknowledge our struggles. Our children have different needs. Our children are on their own journeys. Sure, some of our children have spent days, weeks, months in the hospital. There have been close calls, there have been so many tears. Some of us have been lucky and our hospital stays have been short, our child's health has been fairly good, we don't spend hours at night preparing syringes filled with medicine and food for our child, but we still have worries and we still have fears. It is so important to never downplay your situation. Don't compare your story to others, don't say that there are so many who are worse off. Don't bury your upset. If it hurts to see your child not crawling at 18 months, acknowledge it. If it hurts that your child needs weekly blood work, acknowledge it. If it hurts that your child needs vision and hearing appointments every three months, acknowledge it. If it hurts that your child is in heart failure, acknowledge it. If it hurts that other children get to play at the park, but your child is confined to a wheelchair, acknowledge it. If it hurts that your child is not on the same path as a 'typical' child, acknowledge it.

Our struggles and our pains, they are ours and they are worth acknowledging. It's ok to feel sorry for yourself once in a while. It's ok to curl up in a ball and wish for a different path. It's ok to think that you have it the worst at that very moment. You are allowed those times. When your journey takes a turn, don't compare it to the child who is gravely ill, acknowledge that you are in pain, that seeing your child laying on a hospital bed is upsetting for you and that you would do anything to take their pain away. We are here to support one another. We are here to lend a shoulder to cry on. We are here to laugh with one another. We don't always need to be strong. Our journeys are our own.

8 comments
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Yes, I've seen a lot of this downplaying of our own struggles. To some extent I like to think there's an optimism in this, but I also feel we are sometimes afraid to sound "poor me," particularly if we're talking to someone whose child really is dealing with tougher or more life threatening struggles. But you are absolutely right - we have to acknowledge how hard things are for us, in that moment, and how it all affects us. Everyone needs an outlet for their pain.

Exactly Deborah. It is important to acknowledge that others have struggles and hardships and we need to be there for each other. I just want moms and dads to know that it's ok to grieve, it's ok to feel sorry for yourself. You don't always need to smile and laugh, you can cry and scream. Now, if you are doing this on a daily basis, you should probably seek help or eat ice cream.

Excellent post! While we should all have empathy for one another and our separate journeys, we should not deny ourselves what we are feeling or going through. There will always be someone out there who has it worse, but it's important to recognize our own struggles as well without feeling guilty.

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About Me

Our Journey Begins.....
Our emotional journey from the first time we received the phone call telling us that our sweet baby had Down syndrome until today.....at home with our precious Adele. So many ups and downs so far, lots of humour, some tears but above all, a lot of love and support.